All relationships have ups and downs, it can be hard work to keep a strong relationship when times are tough. I thought I would write about how chronic illness can affect a relationship and ways to get through the shitty times to stay strong together.
I met my husband Timm 15 years ago in a nightclub in Sheffield called The Leadmill , (Im sure EVERYONE in Sheffield met one partner or another there…) we married 10 years ago shortly after I had been diagnosed with Ulcerative Colitis so it is a disease we have learnt about together through the years. Last year I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel pouch.
During my ten years of illness I have faced extreme fatigue, bleeding, aching joints, diarrhoea 30 times a day, incontinence, so many different types of medicines and treatments, endless doctor and hospital visits and stays, two surgeries, a compromised immune system that means I pick up every bug going and more days than I can recall that I just couldn’t get out of bed. During this article I am talking about Ulcerative Colitis but the same goes for anyone living with chronic illness.
1. Be honest with one another
Being chronically ill sucks, it makes you feel alone, and filled with anger, sadness, guilt and hurt. It is so important to be able to share how you are feeling with your partner and for them to share with you. It is hard to share those feelings with someone, and even harder to hear them from someone you love, but you need to make time to share honestly and openly.
Without honesty it is easy to start to assume how the other person is feeling. Right now I am recovering from surgery and I am so exhausted that I spend a lot of time in bed. I lay here thinking “I bet Timm is feeling pissed off that Im just laid here. I wonder if he is angry with me? Maybe he thinks I am lazy.” These thoughts tumble round my head and can make me feel shit. I don’t allow them to though and I spoke to him, explaining my worries. His answer was that he is a little quiet at the moment because he feels under pressure to be working, looking after the children and caring for me and he was worried he was failing at it all.
Open, honest communication really is the key to any strong relationship. It may not be easy, but it is vital.
2. Grieve together.
After my surgery I felt a deep, heavy loss. I mourned the loss of the body I had, the life I had. My husband mourned the loss of the wife he knew before illness. We had to face this together so that we could support one another and learn to accept the new body and new life we had.
To move forward together you need to face your joint fears, get through the sadness and feelings of loss together so you can learn a new way to cope. Your life after diagnosis may be completely different to your life before but it doesn’t mean it has to be worse.
3. Step into each others shoes.
Life may suck hard for you if you are chronically ill and facing a life that you never planned for, but you need to take a step back and think of things from your partners point of view. Think about how difficult it is to see the person you love in pain, how it feels to have to take on the lions share of work or household responsibilities, how it could feel lonely or frightening, how you may feel you have to be the strong one all the time.
On the other side partners of those who are ill need to try and look through the eyes of someone who is chronically ill. Imagine having constant pain and stress, of having continence issues and the whole host of shame and guilt that comes with that, think how it feels to be ill but feel guilty for it, to feel helpless and useless, frightened of both the illness and the affect it has on the people around you.
If you can both do this, then it is an amazing starting point for discussions about love, support and care.
4. Stay intimate
Chronic illness means different levels of illness at different times, it is easy to push away your partner, especially when the issue is IBD as having problems with diarrhoea and bleeding don’t really put you in the mood for sex! But its really important to make sure your relationship with your partner retains some level of intimacy. A relationship without intimacy is a friendship, which may be fine for some couples but if that isn’t what you want then you need to address the issue. Its not just about sex, it is about being close, hugging, kissing and showing each other love and care.
Talk openly about what you want and when. Sometimes I feel that my illness takes away my sexuality, when Im very ill I just don’t feel sexy, I don’t feel desirable or have any interest in sex. But thats ok when I tell my partner that, when I explain why Im feeling the way I do it is easy for him to understand and respect. Without talking it is easy for him to feel pushed away and uncared for.
Equally you need to accept that your partner may have fears or issues with being close to you, they may worry about hurting you or making you feel uncomfortable.
The answer is always to talk, talk, talk.
5. Enjoy the things you have
Ok, things are different, this may not be the life you planned but it is the hand you were dealt so learn how you can make the most of it. If you are with the person you love then you are lucky, make it work for the two of you! When you are ill then plans of nights out and country walks may be out of the question, but you can replace them with movie nights in or hanging out in the garden.
Show each other that you love one another, there needs to be no grand gestures, this isn’t about diamond rings, it is about saying ‘I love you’, ‘I appreciate you’ ‘You make my life better just by being in it’
My husband and I have faced the toughest year of our lives, two surgeries, multiple hospital stays, meds, recovery and a lot of tears. It could have torn us apart, we have been under so much pressure, emotional, financial and physical but it actually has brought us closer together. We have never been closer in the whole 15 years of our relationship and that has come through us both taking on board these five rules, talking, loving and appreciating one another.
Love Sam xxx